Sunday, 10 April 2011

Big ups, big downs

I've had a very unsettling day so forgive me if I sound a little tetchy.

I've had a change of address. Just when we'd all given up on my moving to St Thomas' - I got moved. So I have a fabulous new room with one of London's finest views across the Thames to the Houses of Parliament. And I'm now a ten minute walk from home. This is all good.

"One day, son, all this will be yours"

But I seem to have been somewhat unsettled by the journey and I think I may have been portrayed in my best light to my new nurses. They've put me in the "about to go home" room, in the lowest level of their SCBU. This is because I'm over 37 weeks old, more than 2.7kgs in weight, don't need oxygen and am starting breast/bottle feeding.

Mostly right.

I have tried to feed from Mum a total of 3 times. I have succeeded once. I have tried bottle feeding about 4 times - the first put me back in HDU and the subsequent attempts have been mixed at best.

I tried again today. And I desatted to 30%, and my heart rate dropped to 80 bpm and I turned blue. And the nice nurses at St Thomas' said "Oh". And popped me back in my cot and stuck me on oxygen. And I have had trouble keeping my oxygen saturations up all day. So they kept me on Oxygen, and turned it up, and up and up. And I coped well.

Having a little try at the bottle

And Chelsea had me on Nutriprem 1 which is super-fattening and St Thomas' immediately changed it for Nutriprem 2 which should help stimulate my appetite better. But I can change.

And Chelsea said I had to lie prone (on my tummy) or left lateral (on my side) to prevent my reflux. And St Thomas' say I have to lie on my back to prevent cot death. And I'm adaptable.

And no-one has done anything wrong. As Mummy points out, if you gather 3 radiologists you'll get 4 different reports on the same image. Neonatology is no different. But it's very confusing when you're small.

I filled four nappies in under one hour out of sheer frustration.

After several changes of outfit!

But many thanks to the Outreach Nurse. She scooped up M&D and helped them find their feet. And then she helped me feed me. She started the morning expecting to get me home within a week, and finished it wondering how many special tests I'd need.

"Not more tests"

And then Mum and Dad got rung at a quarter to midnight: "Have you got any expressed breast milk, could you bring it in?" Now I appreciate that Mum is a fully formed milking cow. And as you know, I've had a go myself. But even I know that Mum isn't able to feed me all I need by herself. And that she finds this very frustrating and guilt inducing. So midnight phonecalls to ask for more milk don't necessarily help.

Listen - it will all be fine I'm sure. But I was alarmed to hear I may be going home on oxygen and that it may be my PDA not my reflux which is making me drop my saturations. I'm not sure I'm bothered what the answer is, but when you're very small, clarity is important.

So more tests tomorrow. And then we'll find out where I am after the big consultant ward round on Monday.